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CAL-101: Completion of Cycle 10 (John)

At this point in John's CAL-101 treatment, he is only having to be seen and have labs done every other month. He has CT scans the day before and then we get the results when we see Dr. Flinn. Since he has been responding so well for months now and not having any side effects, there has not been much "news" to report in recent weeks. But I do enjoy posting the positive results and providing some detail for CLL patients who are researching online, looking for other patients' experiences.

John's WBC had gone up slightly (from 7.5 to 9.2) at his last check up. I know that is such a minor fluctuation and still within normal range. For anyone with CLL, 9.2 is a number to be very thankful for. But you just don't want to see an increase while undergoing treatment. I did not worry about it, but I hoped we would not see another slight increase today. And we didn't!

John's WBC today is 6.4. And all his counts are within the normal brackets. His Absolute Lymphocytes are 2.2! To give you an idea of the contrast, John's ALC at diagnosis was 26. It went above 50 at one point (after using prednisone to temporarily shrink the nodes, which increases the white count).

The CT scan showed that John's nodes are all stable. The major reduction has already been accomplished and stability is great news. I've read that after the lymph nodes have gotten very large, it's unlikely they will ever return completely to normal. And there is some ambiguity as to what truly is normal since nodes are throughout the body and not all the same size even in healthy people. John's are within a few millimeters of being normal. And none of them are visible anymore. They have not been visible for months.

At John's next appointment (April 28), he will have completed all twelve cycles of this trial. Since he is responding and tolerating the drug so well, he will "roll over" into a new trial and continue taking CAL-101. Our research nurse, Mihaela, told us today that John is currently her only patient on 50 mg. Most patients are currently on 100 mg. Some who began at the lower dose had to go up in dosage. And some who started higher have come down in dosage. (Marian started at 150 mg. and is now taking 100 mg.)

Dr. Flinn told us that he's now had a few patients develop shingles while taking CAL-101. So he added Acyclovir (antiviral) as a prophylactic measure against the possibility of viral infection or activation of herpes zoster. John is already taking Bactrim prophylactically against bacterial infection. But thus far John has suffered NO infections, side effects or toxicity from CAL-101. Thank God!

Currently, John's only real CLL symptom is that he often feels extra tired. But in spite of that he is still working six days a week and has even started to exercise again recently. So it's not the kind of fatigue he could be experiencing or that other CLL patients are battling.

This time last year, we were coming to grips with John having failed chemo (FCR) and it was pretty discouraging (as I've already shared). This year he's taking a little capsule morning and night and doing beautifully.

Marian's next scans and office visit will be March 16th and 17th. She is also doing quite well.

More than anything else, I want to be a true disciple of Christ; cultivating love, forgiveness, mercy, compassion, unselfishness and humility into every aspect of my life. I am happily married to my knight in shining armor and best friend, John. I am proud to be Danny's mom and Rebecca's mother-in-law. I love being Grandma Shari to my four grandchildren. I am a homemaker, volunteer, writer and "foodie." I love to cook and eat great food. And since 2007, I have been learning all I can about CLL in order to be the best patient advocate possible for my husband as he battles Chronic Lymphocytic Leukemia.